Haemotomocrosis question
Posted , 4 users are following.
Ive been having blood test done and my 1st test was 506 ug/L
44 percent saturation
My next test is was slightly higher than this .
Just found out today i have H63D homozgous metuation detected. As they were testing for the gene.
The doctor recommended to have blood taken out at the red cross blood bank cause he feels the iron levela are to high. But here in australia they have to except you and they wont except that H 63D. Any ideas where to go or what to do exactly and should i be worried. Thanks in advance.
1 like, 5 replies
sheryl37154 paul76189
Posted
Paul, that is something your dr should have arranged. He can get online to the Blood Bank and register you for venesections and how often. If you have other health issues, like heart problems, they will not want to venesect you.
The other option is for the dr to give you a request for venesections done at a pathologist like Sullivan and Nicolaides. There is an annual fee for that at a pathologist. Over $100 unless you are a pensioner, when it is about $35.
Another option is to ask for a referral to a haemotologist at your local general hospital. However, there is generally a long wait time, not huge, but some months. They may not think your case is very urgent because you are homozygous H63D which is not very aggressive.
My husband is homozygous H63D and when diagnosed he was about 557. After he was deironed to <50, he did not iron load anymore.
Good luck.
paul76189 sheryl37154
Posted
jwrhn1951 paul76189
Posted
My Ferritin was around 2000 with a saturation of about 45 although it did spike into the 70's when they were trying to figure out what I had. I'm also homozygous H63D and they kept telling me there must be something else going on because H63D's are not supposed to load iron. It took a liver biopsy showing NASH and 3+ iron deposition and a brain MRI showing microvascular disease with iron depsition and ultrasounds of the joints showing psuedogout arthritic deposits and a EKG showing atrial tachycardia before it dawned on my docs that maybe a H63D homozygote would/could overload iron. It took 6 months of once and sometimes twice a week phelobotomy's before I was deironed. I do them now every 8 weeks, the Hemoglobin is still around 17 and the ferritin stays under 50..
Joint problems (pain and swelling) were what affected me the most when diagnosed and the phelobotomy's pretty much cleared them up which is different than what usually happens with C282's..
With a ferritin of aound 500 you probably don't need to be to worried as long as you can get started with phelobotomy's soon. Although I would say the sooner the better beause as soon as I started I began to feel better. It took a couple years of maintance for the joints to completely clear up though..
sheryl37154 jwrhn1951
Posted
Ireland/UK is Prof John Crowe, France/Europe is Prof Pierre Brissot, Canada is Prof Paul Adams, and Australia is Prof Lawrie Powell. Google the appropriate one for your country, and you will get their University/Hospital address / email.
Perhaps your dr could support you.
Good luck.
marymac1000 paul76189
Posted
Hi Paul
I'm surprised the Red Cross won't take you. I live in Australia & I was diagnosed 18 months ago as C282Y homozygous, which is a little different from you, but my levels were much lower than yours. I went to a haemotologist every fortnight until my levels dropped, & now I go to the blood bank every 3 months or so, which is much cheaper (bulk-billed). There's a thing your GP has to fill in online (like a referral) & then they called me & made a booking. Very easy.